Highs and Lows

My dear King looked wrecked this morning when I arrived at the hospital, although Joshua had been quiet, in a drug induced sleep most of the night, I could see that his Dad did not sleep as soundly. Night shift over; he retired to our room at RMcD House for some much needed sleep.

 Joshua had a difficult morning – as his medication wore off he became very unsettled until the pain was evidently too much to bear. His epidural somehow had run out and there was a period of time for the pain management team to come and assess, and to get other drugs up and running to cover him.

His blood sugar levels went high, and then his blood pressure went low and his heart rate when high. All the while he was getting more and more agitated and inconsolable. Pain Management sorted a plan, one that involved names like clonidine, ripicural?, diazepam and fentanyl. Throughout the day he slipped in and out of sleep and was peaceful for the most part. I can deal with it when he’s not crying.

 It is so difficult as a mother, standing helplessly by his side as he cries through his grimace and thrashes about. I stroke his hair, I bring my cheek to his head and talk to him, hoping he will stop and listen to me, if only for a second, to take a breath. It’s a hard thing to watch, it pains you to the core and you wish with all your heart that things were different. But they are not. This is life, real life, and you just have to deal with it.


Once his pain was controlled it was an easier afternoon. He only cried intermittently, and when he was rolled to check the sites. Damn, I would cry too if I was rolled onto my wounds. Mostly though, he was very sleepy and it was ok. The nurse found him a great big LCD TV as the one on the ceiling was too far away for him to see, and I put Shrek on for him, he didn’t much watch it, but every once in a while he’d open his eyes and have a look then fall asleep again. At least he wasn’t crying. He had this odd behaviour of leaving his arms in this position, even when he slept. Weird.

 There were many people in and out to see Joshua all day, never a dull moment. Each team sometimes came along with 5 or more Drs. It makes me feel secure knowing they see patients like Joshua and his surgery is not new to them. Along with Nurses there were Pain Management Drs, Endocrinology Drs, Orthopaedic Drs, Occupational Therapist, Physiotherapist, Dietician, School Teacher and even a Play Manager. Not that he wanted to play today. Come back next week and he might.

 Andrew and I came back to RMcD House together to have dinner. There were volunteers making meals for families here. It’s just what we needed. Last night we had toast on the ward for dinner as the day was too long. Tonight we had a lovely meal, and didn’t have to do the dishes! One thing, being around Joshua all his life I get to meet some pretty extraordinary people, like Variety Club members and now RMcD House volunteers. There certainly are some wonderful people in the world we live in… and I personally happen to know quite a few of them – my supportive friends and family.

 Tonight I am tired. I can’t quite understand why, I can run around all day, come home to my family& survive on very little sleep. Today, I slept ok, sat on my butt for a good portion of the day and stood next to his bed for another good portion. And I feel more whacked than when I do a 12 hour shift.

 Hopefully tomorrow will be better for Joshua, and each day will get easier I am sure. Thank you for your support. I read each and every comment as it arrives. xxx mwah.

 That’s another day done.



9 responses to “Highs and Lows

  1. There are a lot of wonderful people in this world and you and Andrew are up there with all of them. Thankyou for the update on Josh. Hope all goes well from here. xox

  2. great to hear you had some time out together, enjoy every precious minute, we can all see you two are a great support for each other, stay well, love Rachel xxxx

  3. Great that you can get a decent meal (together as well!)…….I know why you’re tired- you’re not sitting around doing nothing- you are worrying, watching, listening, asking, thinking, stressing, being anxious- you’re actually doing an awful lot without realising it!! Eat as well as you can, get outside for some fresh air and a bit of a walk when Josh is sleeping comfortably and go easy on the coke in the pm so you get a quality sleep yourself- lecture over.

  4. Wow you guys are doing great. What a team. Make sure you get a little leg stretch and fresh air when you can.

    Love Chele

  5. Julie Marchetti

    Thanks for the updates. I spend a good portion of my day wondering how you all are going. Stay strong and stay well.
    The patchwork club here in Geraldton has donated a heap of quilts to Ronald McDonald house to try and make it as homely as possible for guys like you two. Hope that little bit of Geraldton continues to help you both.

  6. I’m with everyone else looking after yourself will make it easier to care for Josh.
    Love again, always thinking of all of you xxx 🙂

  7. I think we must be like a lot of people out there… we are thinking of you guys a lot as we go about the daily stuff, the usual grind. I talked to my girls as we drove through (Health food of a Nation) Mcdonalds tonight for a small sip of coke slushy to beat the heat and I threw all my change into the Ronald Mcdonald change bin. My 10yr old was quick to say “whatcha do that for?” I proceeded to tell them both of that FANTASTIC place you are staying that helps so many people… Hope tomorrow brings steady improvement! Love to you all! Sleep tight!

  8. Thanks for keeping us updated on Josh’s progress, been thinking of you guys heaps…..glad all is cruising along.

    sandra xxx

  9. Pingback: 9 weeks down « The Scrapbook House Blog

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